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  • Marilena Gant

My Journey with an Invisible Illness...

This Wednesday I appeared as a guest on fellow Voiceover Artist Helena Mitchell’s wonderful podcast Have A Cuppa Unmasked, where Helena and her guests chat all things invisible illness.

After chatting to Helena about my own battle with invisible illness, I decided to write a little post to continue raising awareness about AVMs and share my story. Don’t forget to check out Helena’s podcast here.



MY STORY

In 2006 I remember sitting in my primary school dining hall (remember those, with the weird wooden climbing ladders on the walls) when I suddenly felt something burst in my chest. I ran to the bathroom and as I sat hunched over the tiny sink, staring at a red liquid I couldn’t bring myself to accept was blood, I knew something was wrong. What I had yet to discover, was that this moment signalled the start of my longest relationship, my relationship with AVMs.

I have lived with Bronchiole Arteriovenous Malformations since birth, but didn’t know I suffered from this condition until I was 13. I spent a few weeks in hospital in 2006 after suffering from my first lung haemorrhage. I was diagnosed as having an unusual form of Pneumonia and told that my severe bleeding was simply an atypical symptom. Sent home from hospital with some antibiotics and a clean bill of health, I couldn’t bring myself to accept that this was the last time I would experience the scary blood loss which had ruined my favourite packed lunch and sent me to our local A&E.

Cut to four years later, one week after my thirteenth birthday, I was sat at home on the sofa watching Mr Bean’s Holiday, when I felt an eerily familiar pop in my chest. Suddenly my otherwise normal looking family home turned into a crime scene, with the same bright red liquid coving my mum’s beloved white sofas (she’s never bought white furniture since). Barely conscious, I found myself heading to hospital once more and thought of the custard sponge cakes I had lived on in my previous hospital stint. I thought they were the worst thing that awaited me. Sadly, I was very wrong. The next few weeks are a total blur, I vaguely remember the transition from my local hospital to another in London and shortly after it all goes dark. My next memory is waking up in an entirely different hospital, covered in tubes and wires. I had been placed into an induced coma after experiencing a second bleed and was moved to Great Ormond Street Children’s Hospital. It took me weeks to regain the strength to stand again, to hold a pen and write my name, to breathe without oxygen and to face the dreaded custard sponge. After a few months I was discharged and was ready to go home. I was diagnosed with Bronchiole Arteriovenous Malformations in my right lung, a condition I couldn’t spell (and still can’t – thank god for spell check). I underwent a procedure called a particulate embolization, where a team of doctors tried to seal up the problem artery. As I came round from the operation, I was told that me and AVMs were now firm exes, not the kind you accidentally bump into in the pub four years later, but the kind that never speak again.

At age 19 however, I experienced an episode of bleeding once more; my ex was back. After I recovered, I was confidently reassured by doctors that this couldn't possibly be a reoccurrence of my AVM, so off I went to Uni with my laptop and fairy lights in hand. Despite their reassurance, one thought remained in the back of my mind, as it had my whole life; ‘this is not over yet’.

In 2019 I finished my undergraduate degree and was off on my summer holidays with my boyfriend. We had planned to travel around Greece, where he and my grandparents were both from. I went off to buy the all-important plane journey supplies, (an Elle magazine and giant bag of wine gums) when suddenly I felt an all too familiar ‘pop’. Utter chaos ensued. Strangers in Stansted airport stared at me in horror as I collapsed and turned the departures lounge into a budget remake of Carrie. Thankfully, one man ran for help whilst my boyfriend called an ambulance. My ex was back, and here to stay. I was taken to the nearest hospital where I had a further episode of bleeding. Three weeks and some very flummoxed doctors later, I was transferred to Hammersmith Hospital to undergo a second embolization procedure. The procedure was a success, however this time no one reassured me that my AVMs were gone for ever, as they had tried to before, but simply said that this was something I might just have to live with.

Thanks to the wonderful doctors and nurses at Hammersmith Hospital, I have no daily symptoms and a pair of strong, healthy lungs. Despite this, I still live with the knowledge that at some point in my future my AVM ex may well rear its ugly head once more. Now I am prepared if I have to meet my ex again and I won’t be facing it alone. My doctors, my friends and my family will be ready to face it again with me.

I am not my AVM’s and my AVM’s are not me, but my experience with AVM’s has helped me to become who I am today.

THE FACTS

AVM’s affect less than 1% of the population, and even fewer people experience AVMs which affect the lungs. Research, funding and awareness are needed to help those who suffer with this potentially life threatening condition. Symptoms of AVMs vary dependent on their location and size but can include headaches, seizures, breathlessness, chest pains and unusual bleeding. If you have any concerns or simply want to find out more information, speak to your GP or health professional or check out the links below:

https://www.butterflyavmcharity.org.uk/

https://www.nhs.uk/conditions/hereditary-haemorrahagic-telangiectasia/

https://www.stroke.org/en/about-stroke/types-of-stroke/hemorrhagic-strokes-bleeds/what-is-an-arteriovenous-malformation

https://www.avmsurvivors.org/




©2020 by Marilena Gant